Day 1

So here we are. Day one. The assessments are done. I’m suitable for the trial.

I’ve had an MRI scan, lung function tests, blood tests, cognitive tests, an ophthalmology assessment, a dermatology assessment, ECG, EDSS (Extended Disability Status Scale), a widely used, and often derided, tool for measuring disability in Multiple Sclerosis, and goodness knows what else tests. The works. Good job I get my expenses paid; I’ve been all over the show.

I needed to get to the Research Centre early on Dosing Day 1. First a brief assessment from a doctor to check that I was healthy, then a baseline ECG, BP and pulse before taking the first dose. There were two of us starting the trial that day. Andrew was at the point that I had been at a few years previously, when MS had decided that he needed to stop working, the sick pay was running out and he was entering the minefield that is the benefits system. Although we had both brought a book to read, we spent most of the day talking, interrupted hourly by the nurse coming in to check our BP and pulse in case of adverse reaction. We also had two more ECGs, three and six hours post dose. A drop in blood pressure is a possible initial side effect of starting the drug, should I be in the two-thirds of the group that will be on it. So the dose was titrated (increased slowly) over the first week, during which I would have to wear a heart monitor linked to the hospital.

Finally, eight hours after arriving, we were declared fit to go home. We were issued with a diary to record what time we had taken our tablet each day, along with a card to say we are on the trial which we need to carry with us at all times. The bottle of tablets was put in a bag with an ice block to carry home. It is supposed to be kept at fridge temperature. That’s going to cause some fun on my upcoming trip to Oz.